Ok, maybe not completely defeated, but the news we got today just reaffirms my belief that hard work, building a great support team, and aggressive therapy can make the difference. That said, did we do everything possible? I don’t think so, but then again, if you think you’ve done it all, maybe you are missing something else. To put it in a sports metaphor, go 110% and leave it all on the field … but know that there is always something more you can challenge yourself to do better next round.

We followed up with J’s developmental evaluation (from early December 2007) with the therapists today. The ladies at Developmental FX are just awesome, and they really care about what they do. They did his developmental evaluation back in August 2006, where they couldn’t even do age appropriate testing (he was physically 4 years old) and pegged his development at 22 to 29 months of age (mental, speech, physical, etc). Keep in mind that those numbers were similar to the speech eval that was done at University of New Mexico Hospital in March 2005, and he had made _progress_ in the 3 months with us prior to his 2006 eval. Scary, eh?

Well, we have the “final” report, although we would like to work in inputs from J’s biological parents (where he is now), but they still haven’t submitted their forms or made an appointment to meet with Developmental FX yet. In a nutshell, Developmental FX was very happy (and maybe a little surprised) at how much J has grown. They now estimate him to be around the 52 month (4 years, 4 months) developmental stage. At the time of the eval, that puts him only about a year behind!

Through hard work, a great support team (both professional and personal), LOTS of positive re-enforcement, education (for us and J), a (very) little medication, the GF/CF diet, and just plain challenging him to develop and grow, we managed to do over 2 years of developmental growth in about 15 months. Something like 176% growth and developmental rate? I’ll take that! I think his rapid ascent makes it pretty obvious that _he_ was not the problem, but rather it was his old environment and lack of a good support team. Reading his old reports, he had some pretty good early intervention support, but somehow, it just didn’t stick.

Could *we* have done better? Probably! We did have quite a few hiccups along the way, and other external events that made it difficult for him to focus and increased his overall anxiety. As we got closer to what became the transition back to his parents, his anxiety level was visibly high — huge increases in his door fixation, thumb sucking back in full force, even some behaviors that were completely gone came back (like the head shaking) and more frequent hand flapping. He even lost some of his language and looked “lost” more often. It’s really sad to see a child fall apart right in front of your eyes.

Naturally, this report is bittersweet. We are very proud of the work we have done, the progress we’ve made together, and the foundation we’ve helped him build. At the same time, we can only hope that he continues to get the same support and dedication that we’ve given him over the last 20 months. Now that we are no longer directly in the picture, we have to rely on information that trickles back from his support team as well as others who we have crossed paths with and have taken an interest in him (he’s a really likable kid). As much as we’d like to continue to be involved in his day-to-day, the emotional trauma and mental distress that bouncing between the households was causing would more than counteract any benefit we could add — and that’s something that we think and grieve about every day.

We still believe that J has the ability to be mainstreamed, but he still has a long way to go. We know that his parents are busy and work and all of that, but we hope they can find a way to keep giving him the attention he will need to succeed and have a quality life (meanwhile, not ignoring his little sister, A). If they don’t help him succeed, it will be everyone’s loss — he’s a bright kid and has a lot to offer.

The take away from this? If you have a child with autism, DO NOT GIVE UP! Anything can happen, and if you WORK HARD and be open to new ideas, talk to your community and support professionals, build a network (personal and professional), you have a great chance of giving your child the ultimate gift — a quality, and independent life. There are no “do-overs” or “I’ll do it tomorrow”, only do it now. To quote our Jedi master Yoda, “there is no try, only do”.

Seriously, though, you are your child’s only true advocate. You may build a fantastic support network, but they are only there to support you help you and your child. The effort you put in will bring you rewards that money cannot buy.

Whether it is or isn’t someone’s fault that your child has autism, or that $deity is to blame or whatever is all TOTALLY IRRELEVANT. The issue at hand is WHAT ARE YOU GOING TO DO NOW! And that can only be TAKE ACTION. Time is running out, so get to it.

We did it in a short time, with no forewarning, no training, heck, not even a clear timeline or future. If we can, so can you.

Love your children and work your a$$ off now … you can always sleep next year. 🙂

We have in our care our great nephew J and his little sister A, and he has been diagnosed with Autism since 20 months of age. He came to us when he was 3 3/4 years old (A was only 5 weeks old) for the Summer of 2006. The goal was to help out his parents get back on their feet and get stable again.

Sadly, J had not made much progress between age 20 months and 45 months (3 3/4 years old) … he was still largely non-verbal, poor gross motor skills, very poor fine motor skills, not potty trained, etc. A was born slightly premature, and spent a few days in the ICU and was on oxygen for a few weeks after coming home, and was under 8 pounds when we picked her up.

We hit the ground running as best we could (we called everyone we knew who might be able to give us some insight on dealing with Autism during our 10 hour drive to and from New Mexico … I’m sure T-Mobile was upset we were getting lots of free weekend minutes!). We networked out with the local groups … more on all of that in later posts, I hope. Basically, we did everything we could in short order.

Within 6 weeks, we had him potty trained, starting to use more words than jargon (although not all that intentionally), and we started to take advantage of his echolalia to teach him words and enunciation. Also, he exhibits traits of Gestalt learning (repeating phrases verbatim, but not understanding they are composed of individual words). So, rather than just teach him “yes” and “no”, we taught him “yes, please” and “no, thank you”. To him, it was still just yes and no, but to others interacting with him, he appeared to be more polite. You would be surprised how much extra help and attention that has earned him. Also, another big plus for him is that he is extremely social and will reference (i.e. look in your eyes and acknowledge) you.

We also nearly doubled A’s weight in the first two weeks. Not surprisingly, she became much more lively and vocal (and nowdays, she’s quite loud and extremely active!).

At the end of August, right near J’s birthday, we had his annual developmental evaluation done by Developmental FX (a great team over there), and much of what we learned from them helped everything suddenly make sense. J is bigger than his chronological age … he’s always been about 1 year bigger (not fat or “big boned”, but actually 1 size bigger), so it was hard to see through that and recognize his behavior for his mental age — which they diagnosed at 20-29 months (for the various disciplines, speech, gross and fine motor skills, etc). Suddenly, it made sense! He was throwing 2 year old temper tantrums and performing actions at a 2 year old level.

Now that the lights were on for us, we were able to re-calibrate our efforts and stop trying to teach him anything we could, but actually tailor our our efforts to bringing him up from that targeted age range.

In order to make ourselves more effective, we enrolled ourselves in a Hanen “More Than Words” class put on by a local Speech-Language Pathologist (SLP), Sheila Goetz. It was excellent (more on the class in another post, too). We were able to clearly see the techniques that we were already trying to use, but learned out to fine tune and focus them, as well as a bunch of new ideas — it really made a positive effect on our ability to help J learn to communicate!

We worked very hard and were able to make pretty significant progress by the end of the summer, the parents agreed with the extended family that it would be best to relocate up here to Colorado and take advantage of the environment and networking we’d established for the kids. They moved up in September and October of 2006 with the intent of getting settled quickly and transitioning the kids back ASAP.

At this point, it was Fall 2006, and the parents still weren’t quite ready to receive the kids back yet. We remained the primary caregivers and now we are 19 months later and we think it is time that we try to transition the kids back. We certainly wouldn’t mind if they stayed forever, but they do have parents who love them and we have all been working toward this goal of reunification for quite some time.

We have made tremendous progress with J and his skills … we recently had his annual developmental evaluation done (by Development FX, of course!) and are waiting for their report. We have been keeping a close eye on A and have had her evaluated at 3 months, 6 months, and then have completed the parental self-evaluations for her every 2 months or so until her recent 18 month evaluation (which J’s doctor said she looked like she was good or ahead of her development). She is still not out of the woods yet, as it seems to be a more frequent occurrence that kids hit 18-24 months and suddenly have the onset of Autism.

Otherwise, she has had the benefit(?) of all of our training, research, and working sessions with J … much of our work has bled over to her, or we naturally use the techniques on her. At 19 months of age (almost), she has over 150 words in her vocabulary, she communications intentionally, and has excellent cognitive skills (can follow 2-part directions, figure out the better route around objects or obstructions to get to her target). She is also very social and caring, and does pretend-play very well. She would be potty trained by now, but we’ve had some setbacks related to some transitioning with the parents (not sure why, but that seems to be the trigger to regress).

They are both *so* smart and beautiful kids, and we can only hope that we’ve been able to help them build a solid base that they can continue to grow on.

Over time, I hope to post more of our adventures, people met, lessons learned, in hopes that it may help someone else who finds themselves dealing with the mystery that is Autism.